Crippling Reality of Love

Letter to myself when I fall in love: 

You’re in a good place. I never thought this day would come honestly. Sure people tell you you’re pretty all the time but it doesn’t compensate for what love can make you feel. For years there was no one you were even remotely interested in. And other years you found yourself just settling for whatever came your way. It was all because you never thought it could or would become a reality. 

You’re confident. It shows. Some may call you conceited. Sure. You don’t really care. But what people didn’t know was that you didn’t believe a man could love you. And see you for you. And accept your idiocy sometimes. And your weirdness. And dramatic rants. And your ADD. And lastly…. your disability. 

It’s so fucked up because everyone knows you as this person that does not by any means let your disability get in the way of ANYTHING. Yet, love is the only thing in the world that made you mentally confused and torn. You tell yourself your disability isn’t what defines you. That you’re just like everyone else. That you can do anything. So why did you think this?

It’s because that’s the way YOU think. You are confident in yourself. But you were never confident in the male population. To think the way you think. To see the things you see. To accept you the way you accept yourself. 

Sure you got along with guys and can make friends with the snap of your fingers. But to get a guy to see you in a way that’s more than just a cool girl to drink with… is very difficult. It’s a special kind of effort. 

You had to love a little extra to prove you’re capable. To show him that it’s not scary to be with someone that has a physical disability. That, yes, you can have sex. 

Enjoy the love he gives because you’ve earned it. You deserve nothing but the best. You deserve love and respect and honesty. 

I’m proud you didn’t settle because you thought you had to. I’m proud you found yourself. I’m proud that you’re happy. I’m proud you finally learned what true love means.

Love,
Yourself 

Perspective time. 

All an able bodied girl needs to do is wear a low cut shirt and a mini skirt and walk by a man and instantly get looked at sexually. The love part usually comes after this initial encounter.

If I wore a low cut shirt and tight skirt and rolled past a dude it’s not like I can catwalk past him and strut my stuff. And the only ass he’s seeing when I roll past is 300 pounds of steel and wheels. 

The more I think about it, I’m not insecure in myself finding love. I’m just skeptical about every guy that walks by. For some reason, I’ve convinced myself that I’m not capable of love. I convinced myself that a guy who’s trying to flirt with me is only doing it to be “nice.” I convinced myself that guys will have sex with anyone so that doesn’t lead up to love in my case. Because what guy would love me. Society somehow made me believe that no one will ever truly love me because of something I can’t control. But I’m wrong. 

I’m not in love with anyone. I’m not sure I’ve ever even been in love, but everyone has their flaws and love is still everywhere. We can hold off on marriage for a while… but when I love something or someone, it’s strong and true. There are so many loving couples out there with baggage and flaws yet all that stuff doesn’t matter if it’s real and unconditional. It makes me sad that I actually feel this way. It makes me even sadder that it’s a common misconception that most disabled people feel.

    A Letter to the Guy that Pitied Me

    Thank you. Thank you for telling me the truth. Thank you for not wasting my time in trying to be your friend or anything more. Thank you for showing your true colors. Thank you for not being fake. Thank you for squeezing out the little ounce of faith I had in the male population to a pulp.

    I have never ONCE in my entire life even considered the possibility that the people in my life would ever do something for me out of pity. And you thought that it was okay to kiss me, out of pity, and then TELL ME that it was out of pity AND THEN not even have the guts to give me the reasoning. Probably best I don’t know.

    Even after confronting and asking you to explain yourself, you refused. Chose to end the conversation instead of even attempting to save it. Had absolutely no interest in trying to mend our friendship. To make me not upset, to even try and take back what you said. And with no closure…. this left me to openly analyze your actions. My analyzation led me to believe that you kissed me out of pity because you probably think that I can’t find another man….specifically because of my disability. There isn’t too much else I could link to your sense of pity. Especially since you agreed to being my best friend’s date to an event without hesitation considering you guys haven’t even been talking regularly or ANYTHING. So was it pity date too???

    The fact that you look at me and feel pitiful makes me really wish I had the ability to kick you in your undersized knads. The fact that you could look at me and feel pitiful makes me believe you think you’re better than me. The fact that you THOUGHT I had feelings for you AND kissed me out of pity makes you scummy and rude and a coward. The fact that you felt that way makes me realize what kind of person you really are.

    LOL. This is actually all so hilarious to me because I am probably one of the least pitiful people EVER. My life is fucking amazing thanks to all my friends and family, I’m successful, hot AF, and live on my own. As far as I’m concerned, I’m kicking this disability’s ass and your act of pity has done nothing but make me angry and skeptical. Skeptical at the fact that I truly thought you were a genuine, nice person. But you’re not. Skeptical about the type of person you actually are.

    I pity you for being so uneducated. I pity you for having such a big head. I pity you for believing that I needed you. I pity you for being rude and cowardly. I pity you for losing a lot of respect from not just me but my close friends too. I pity you for being the subject of this resentful blog post.

    Next time you kiss someone out of pity, do them a favor and DON’T. I think you should really question your own sense of self before deciding to pity others that don’t deserve pity.

    Sincerely,

    A non-pitiable person

    ISO: Yellow Brick Road

    Looking for an accessible and affordable apartment in Chicago is close to impossible. I came up with a list of requirements while searching for an accessible apartment which able-bodied people don’t really need to think about as far as accessibility goes:

    1. Price: for obvious reasons. Note: the cheaper it is the more inaccessible it is because it’s usually a really old building.

    2. Neighborhood: Is it safe?

    3. Distance: How far is it from my job? (less than an hour is ideal travel time)

    4. ACCESSIBILITY:

    • Is there stairs to get in the front door of the building?
    • Can I get into the building/open the doors by myself?
      • Are there push buttons?
      • Is there is a fob or a key?
        • If it’s a fob can I reach the swipe device to unlock the door? And then can I open the door myself in the time allotted before it locks again?
        • If it’s a key, can I reach the key hole? Do I have the strength to fully turn it to unlock it?
    • Is there an elevator? (if not a first floor unit)
      • Can I reach/press the elevator buttons by myself?
    • Can I get into the unit by myself?
    • Is the door lightweight enough so I can open the door to get out of the unit myself?
    • Are there stairs in the unit?
    • Is there a walk-in shower or just a tub?
      • Can my shower chair fit in the shower/tub?
      • Does the shower have a hose shower head?
    • Can I reach at least one sink in the unit?
      • Can I turn that sink on by myself?
    • Can I fit through the doorways?
    • Can I fit in the bathroom? Or will I have to leave my chair outside the bathroom and have someone carry me inside forcing me to use the bathroom with the door open?
    • Is the toilet the correct height?
    • Is it spacious enough?
      • Will I have to get a twin sized bed to make sure there’s room for my chair to move around in my bedroom?
    • Is the kitchen too narrow?
    • Can I reach the light switches by myself?
    • Are the buttons on the stove/oven low or high?
    • Is the microwave over the stove?
    • Is there a close transit stop near by?
      • Is that transit stop accessible?
        • Is the transit stop that lets me off at my job accessible too?
    • Can I make extra copies of my key or do I need to find alternative ways for my PAs to enter my apartment?

    Imagine looking for places online and you find the PERFECT place, from the pictures and description provided. Now imagine that happening even AFTER you find a place that’s listed under the “wheelchair accessible” filter option. So much excitement and faith and enthusiasm for these seemingly flawless finds. Then imagine calling the realtor to make an appointment for a viewing and ask to confirm the accessibility and they tell you that it’s a three-story walk up or there are steps to get in the building or that there’s steps in the actual unit… every single time. The amount of false hope I’ve had in the past two years of searching for apartments really puts a damper on things…

    More accountability needs to happen and false advertising needs to stop. What twisted definition of ‘accessible’ do they have that gives them the right to listed as such. Or do they list it as accessible to guarantee it will pop it in more searches?

    Some of these I understand can be changed or tweaked after signing but there’s a couple of factors that come into play here. For one, that’s more money I’m forced to spend for this that able-bodied people don’t need to. Second, although you are allowed to renovate your apartment, realtors usually want the apartment put back the exact same way we found it. Which is in turn, is financially counterproductive unless I plan on staying there for more than…. let’s say 5 years at least.

    Now let me go into a little more depth. Yes, the ADA does require buildings to be accessible. But buildings that were already built before this law came into play basically get a “get-out-jail free card.” In Chicago, as if you don’t know already…. there are a lot of old buildings. These older buildings are in my rent price range but usually walk-ups. They also are much smaller so even first floor units wouldn’t work.

    For a two bedroom can range anywhere from $600 to $5,000+. Believe it or not. In order to find all these requirements would be typically somewhere in the $1,100+ range…. per person…

    Yes, I have a job. But I’m definitely not nearly making a six figure salary to be able to afford something like that. Especially since I’m also still pretty fresh out of college and taking care of some of those bills currently.

    Now, you might be thinking, what about subsidized housing? Well, for one I would rather not live in a building with all disabled and old people. Honestly, I think of disabled people as our own race. I don’t want segregation. I want diversity. Inclusion. People my age. People that are able-bodied. People of color. All types of people. ALSO, subsidized housing is for people with low-income. Which I don’t qualify for with my full-time job. It really grinds my gears to know that just because I am disabled and need housing also requires me to have low-income. I don’t even have the option to live in subsidized housing even if I wanted to. So there’s that.

    I am an independent, middle class woman trying to fit normally in society with a disability.

    I also don’t believe that anyone should settle. If I’m going to be signing a contract and locking myself into anything, I better really fucking like it or I will not sign. I will not sign to any apartment I am not 100% in love with just because it’s the “only” option I can find. I don’t believe that’s fair to myself or a good example for others out there that may be in a similar situation as me.

    My best option would be to just buy my own condo or house but unfortunately I don’t have the funds to put a down payment on one. It is something I plan on doing in the near future though! Definitely more cost-effective than renting in the city.

    For now I continue my depressing search of the constant reminder that accessibility everywhere isn’t as acknowledged as it should be…

    Also, if anyone is willing to help me pay for that down payment on a condo, please let me know. (:

    Inspiration? Far from it. 

    Picture this. A 22 year old girl goes to a lake house with her friends. She does everything from kayaking to jet skiing to tubing. 
    If this girl was able bodied, that’s awesome. She’s having fun. No one thinks twice.
    If a disabled girl did this, she’s an inspiration. 
    But for what?
    I don’t do the crazy, stupid, spontaneous, risky, fun things I do everyday to inspire anyone. I’m doing it because it sounds like a good time. 
    It’s one thing to be inspired by the things I do, but I want everyone to know that I’m not doing these things TO inspire. I’m most likely doing them for one of three reasons…. It sounds like fun, I can get drunk, or to make money. Or all three… 
    I’m not an inspiration. People that are inspirations are people like Martin Luther King Jr or Rosa Parks ….or my favorite person ever, Ellen DeGeneres. These people have done or are doing inspiring things. Make the world a better place. Helping people. Standing up for what they believe in. 
    I’m not standing up for anything…. Not just because I physically can’t… But because I’m not trying to. I have no intention to. And I’m sitting in a wheelchair, just living my life, going party to party and getting hammered…. Yet that somehow makes me an inspiration. 
    I like to have fun. I don’t like my disability to be a reason for me not to do something socially normal. That’s all I’m being. Is normal. 

    When you think of a “normal” 22 year old woman you think college, dating, fun, trouble, learning to adult, shopping, heart breaks, partying, friends…. The list can go on. But that’s exactly what I’m doing. I’m not doing anything special that any other 22 year old able bodied person would be doing. YET, I’m considered an inspiration for it. 

    I do what I do every single day for no one else but myself. People that are inspirations do things for not only themselves, but people around them. I’m not doing that. 
    So if I inspire you to do something, that’s great. I’m glad I could shed some light. But please do not call me an inspiration because that’s not my intention. My intention is to ignore the social norms and expectation there is about disabled people. My intention is to prove that there’s always space for ABILITY and CANs. And I’m doing that for no one but myself. 
    I’m just trying to live my life, dude.  

     

    SMA Treatment ahead

    In less than a year, the SMA community could possibly have a drug!! We are that much closer to treatment.

    For those who are completely out of the loop:
    I have Spinal Muscular Atrophy (SMA), a debilitating muscle disease of the major limbs (arms, legs, lungs, neck, etc.) There are 3 different types of SMA, Type 1 being the most severe. Most children are on feeding tubes by the age of about 8. Those with type 2 usually were never able to walk. And those with type 3 can usually walk until the age of about 12. This disease does not allow us to gain muscle, only lose or maintain what we have. Through these clinical trials, results have shown babies actually reaching milestone goals such as crawling and walking and even something as simple as keeping their heads up. All milestones which type 1 babies usually never reach.

    I’m overwhelmed by the steadfastly results and all the futures that are going to be saved and changed when this treatment becomes available.

    Now I know what some of you may be thinking and no this drug isn’t going to just magically make me walk. But it will allow me to gain muscle so I will be able to be more independent. My SMA is far too progressed to be able to expect a miracle out of this drug. I would need many of surgeries first so i don’t think it would even be worth it.

    Having to rely on other people truly fucking sucks but I have no choice but to make the best out of it if I don’t want to be miserable every single day.

    The main thing that sucks about relying on other people is having to use the bathroom. I can push aside hunger or a glass of water for an hour or two until my next Personal Assistant shows up, but having to use the bathroom and being forced to wait for it is the worst feeling in the world.

    What I’ve learned from being in a Facebook group of other people with Muscular Dystrophy is that we all have similar struggles. And one of them is pee math.

    Pee math is a mental algorithm we (those who cannot use the bathroom by themselves) created by the time we got our first wheelchair. So probably around the age of 3. Pee math is deciding how much to drink before your next Personal Assistant is scheduled to come help you. Pee math allows you to learn very important things about yourself…. aka how long it takes for your body to digest things. Mine takes an hour or more. So if my PA gets me up at 9am and the next person isn’t scheduled until 3pm, I would drink lightly or only if I was extremely thirsty until about 1:30. Then I wanna start drinking as much as I can to make sure I get all my fluids in but am able to release it all when I have someone there to assist me.

    It’s very shitty I know. But it’s a lifestyle I’ve subconsciously accustomed to.

    Well. Back to the drug that’s hopeful to come in the next few months.

    I am beyond excited that I will finally be able to work out and actually feel like I’m improving myself. Right now, without the drug, I should be doing physical therapy everyday but I’m so discouraged by the fact that I’m never able to gain anything from it. When this drug comes out I will be able to buy cute workout clothes and actually use them for their purpose….. real talk. So many cute things. But seriously, I might just become a gym rat. And I’m excited.

    I’ve lived my entire life in a wheelchair and finding myself and making something of myself. And I’m proud of that person thus far. Though, I’m not going to lie, I absolutely have spent nights wondering what my life would be like if I did not have SMA and could walk… but I’m also not crying at the fact that I can’t or will never be able to.

    This drug is really exciting to me because I will be able to gain more independence, even just by the simplest of tasks like opening a door on my own. My main focus goal in the long run will to be able to transfer myself in and out of my chair. Specifically to be able to use the bathroom on my own. It is the most difficult yet simple task in my life that holds me back in any way. To have to make sure that if I want to travel any place I will need someone to be there to help me use the bathroom is one of the hardest obstacles I have to deal with on a daily basis.

    With this drug, I will work my ass off as much as I’m allowed to- to get to my goal in the long run. My independence is the most fundamental aspect of my present and future.img_0200

    MDA Double Life

    As you all know I currently work for the Muscular Dystrophy Association’s National office. I’ve been working here for seven months now and it truly has been an eye opener. For starters, the people I work with are some of the nicest people I have ever met. You always hear stories about offices having the competitive, stuck-up office bitches that think they know everything and are the best, well MDA doesn’t have that. Everyone is helpful, supportive and on the same team. We all want to see each other succeed while we strive to follow our mission and vision.

    As a person with Muscular Dystrophy, I’m able to see both sides of the spectrum. As a child I went to MDA Summer Camp, went to the clinics to see specialists, and attended some of the fundraisers. Now, as an employee, I get to see the background behind it all. I’m able to see the people who make it all happen, who have their hearts in it, and the dedication that the organization has to grow for the individuals with MD and their families.

    Now I know what a lot of you are thinking… that MDA isn’t exactly your favorite organization (for your own personal reasons) and I can honestly say I was in the same boat until working here…

    Growing up, MDA Summer Camp was everything. The anticipation that lead to just seven days out of the year completely took over my mind and changed my life (And to this day I still have the same feeling waiting for Horizon camp each year). As a kid, camp was a time to play, to be free, a vacation, a break from parents, a time to grow, to be myself, and most of all camp was a time to learn. After I became too old to go to MDA Summer Camp I felt as if MDA had nothing else to offer me. I felt that all the people I once knew at camp had new campers/friends and that I was just chopped liver once I graduated. I felt that going to the clinic was useless because there is no cure to what I have. I felt that MDA wasn’t doing everything they could to benefit me or my future.

    I started working for MDA when the brand launching was first coming into play and was able to be a part of a panel where parents and people with MD got to give their opinion of the new brand logo, mission, and vision. During the panel I realized that MDA is starting to become aware of the things they are doing wrong (well, wrong in my eyes). MDA is growing into an organization that people can truly rely on and respect more. They’re starting to fix the issues they have, gain a new perspective, and slowly becoming a stronger outlet for all individuals with MD.

    Part of the problem, I believe, was that there weren’t enough people with MD telling MDA what they were doing wrong. That is currently one of the changes they are making. They want and are looking for advice and opinions from people living with these diseases and their families. I love that I am able to give my opinion from personal experience to better the organizations outcome.

    I’d hate to add a cliché… but Rome wasn’t built in a day. MDA really is growing into an organization that adults and families can believe in. I’m not just saying these things to make sure I don’t get fired either… I am just glad to have the honor to be able to be behind the scenes as well as being an asset to the transformation this organization has yet to see.

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    Wannabe Couch Potato

    Do you ever have those days where you just want to say fuck the world and everyone in it. The days where you just want to bum around and watch Friends all day. The days you don’t want to talk to anyone and let your mind breathe. Not have to worry about the next drama-ridden “life crisis” someone’s going to throw your way. Not having to change out of your PJs. Not having to eat anything besides Cool Ranch Doritos and French Onion dip. 

    In the world of people with disabilities, it’s almost impossible to have a day like this. Everyday having to watch the clock and making sure we’ll be home in time for our next PA to come and help us pee at 3pm. And then again at 9pm. And having to talk to them while they’re there to prevent any awkward silence. 

    We don’t have the choice to not have company over or to not have a care in the world. In our world, our care is our world. Our world consists of having to constantly think about things like if I shouldn’t drink too much water to make myself not have to pee until my next PA comes in 6 hours. Or making a mental list of things I have to get done around the house that I need a PA to help me do, like mop the floors. Or taking out the trash that smells like last weeks jungle juice. 

    In our world, our care is our world.

    In a way, it’s nice to have company instead of being a complete loner. But having a day completely to yourself with no interruption is close to impossible when you have to rely on people to completely relevant daily tasks. 

      

    I believe in you. 

    “Dear Julianna” is a campaign that was created by adults with neuromuscular diseases to help kids with the same neuromuscular diseases feel more confident in the skin they’re in. Julianna is a 5-year-old girl with CMT (a type of muscular dystrophy) who ultimately wants to choose “Heaven” instead of living through a life with her disability in the event that she gets too sick and has to choose to fight through it or give up her life. This campaign was made to show Julianna, and other kids like Julianna, that life with a disability can be challenging but worth living and fighting for. These adults are sharing their stories and hardships within these letters and showing these kids that we are still living, and very happily, at that. I wanted to join the movement and wrote a letter to Julianna that I wanted to share with you. Here’s a link to the news story about Julianna if any of you haven’t heard of it or are curious.

    CNN-Julianna News Story
     
    Here’s my personal letter to Julianna. Enjoy! 

    Dear Julianna,

    Everyone is unique in their own way. Including you. And you should share that with the world. You are the best person out there that can tell your own story. Your story is like no one else’s. And people can learn from you along the way!

    Every person with or without a disability is like you in some way or another, so you don’t ever have to feel alone. A lot of people are afraid of what others will think of them if they feel like they don’t fit in or are different. Just know that if you think you’re weird, the person next to you might be weirder and you’d have no idea. So don’t be afraid, the world isn’t as scary as people make it out to be. The world is only scary when we focus on all the reasons the world CAN be scary. We’re all trying to find our place in this world to make us feel like we belong. Your mission is to find your own happy ending. To figure out where in this world makes you happy. And your disability is only going to help you find that answer. Your disability will actually make you stronger. It will empower you to think differently. To be a keen observer of society. To really appreciate things that seems so minuscule like curb cuts or spacious public bathroom stalls. 

    I could sit here and tell you about my disability and how it’s helped me become the person I am today. But this isn’t about me. This is about you. I want you to really be able to grasp the person you are and embrace it. Just because you have a physical disability it does not make you any less of a person. It does not make you mentally incapable. It does not make you incapable of doing. And finally it definitely does not mean you can’t face obstacles that seem close to impossible for a disabled person. The key is to believe in who you are and who you want to be. You’re the pilot of this plane. Now, just think. Where do you want to go?

    It’s up to you to decide how far you wish to push your abilities. Even if it’s just picking a pencil up off the floor. Are you going to wait for someone to come home to pick it up? Or are you going to try and do it yourself first? Using a back scratcher maybe? Or sticking tape to the end of stick/or ruler and grabbing it? Or what about living on your own as an adult? Do you want to live by your own rules and feel as independent as possible? Or depend on your parents for every thing? Do you want to put yourself out there and open up to the idea of finding PAs on your own? And living by your own terms?

    Your disability is made out to what you make it to be. Don’t let your disability control you, you control it! If you tell yourself “I can’t,” then you won’t. If you tell yourself “I’ll try,” you’re brave. If you tell yourself “I will,” then you will. 

    Having a physical disability is completely subjective. There’s not a default way of completing a task. There’s no instruction booklet on how to tie a rope to a doorknob and pull the string to shut doors. Or how to use a broom to reach high things. There’s no single person that can tell you what you’re capable of doing or how exactly it should be done.

    Just know this, just because you have a unique way of completing a task that’s different from able-bodied people, doesn’t mean you’re doing anything wrong and it doesn’t make you any less “normal.” Nobody is “normal” whether it’s clear to the naked eye or not. There isn’t even an accurate definition of the word normal when it comes to society. You do you. And be proud of your independence you’ve worked so hard to gain. Be proud that while everyone else around you is doing things in black and white, you’re doing everything in color. Be proud that you are you. Be proud that you found a way. Be proud that you believe in yourself. Be proud that you’re brave enough to face the world on your own. Be proud that you’re not letting your disability define you. Be proud that you have control. 

    While everyone’s posting pictures of themselves, I want to share a special symbol with you. 

      
    Before I tell you what this symbol means to me, I want to think about what it would mean to you. This is the 3E Love symbol. Stands for embrace, empower, educate. 

    The meaning of this symbol is created through your own interpretation. 

    To me, this symbol means acceptance. Independence. Unlimited possibilities. Happiness. Confidence. 

    This symbol, to me, reminds me that I am who I am and there’s nothing wrong with that. It shows me my disability does not define the person I am. It shows me that I am strong enough to do whatever I set my mind to. It shows me that I can’t give up when all odds seem against me. 

    So, my final words to you is to never stop trying. Stay you. You are not alone. And you, most certainly, can do whatever it is you set your mind to. As time progresses, society is becoming more and more accessible to the needs of people with disabilities. There’s always a way around an obstacle. Your job is to find the alternative path. 

    I bid you good luck on this journey. I hope I was able to shed some light. 

    If you believe in yourself, the rest of the world will follow. 
    Yours truly,

    Saws. 💙

    If anyone is interested in reading more letters here is the link to the campaign.  Don’t be afraid to like and support the movement on Facebook as well!

    Dear Julianna Website
    Dear Julianna Facebook Page

    Accommodation Proclamation

    It’s interesting when my friends help me to see how they think they should do it without instruction by using the same techniques they’re familiar with. 

    What I mean by that is, when a person comes to help me, they should technically ask me what way works best for me is. But I have some friends who have experience helping other disabled people, which is great. But there’s just one issue with that. 

    When I go by my friend Alex’s, and her friends help me, they automatically help me the same way as they would help Alex. But we are two completely different individuals who sit comfortably in many different ways. For example, Alex sits on the toilet sideways. I, for one, cannot and do not like to sit sideways on the toilet. Alex needs her sandwiches cut in 4, I do not. I like wearing my leggings with it stretched over my heel, Alex does not. 

    Each individual person likes and needs things done a certain way depending on their disability. Even if it seems like a small pointless detail, just think about it this way… If we were physically able to complete this task on our own, we would do it a certain way… Actually, in our head we map out how we would do it ourselves. And try to explain to our helpers as descriptively as possible how we like things done. 

    The best technique of all is being able to realize how the slightest of changes in helping a disabled person can make a worlds difference in that persons comfortability. It’s in both parties best interest to ask what technique works best for each situation.

    Just because you help one disabled person, does not mean that technique will work for everyone.  There is no default here.

     If you’re a chef and you cook everyone’s steaks medium rare without asking their preference, you’re going to have a lot of angry and confused customers.    

    Personal Bitches, I Mean Assistants. 

    Today’s topic will be all about personal assistants. And some people may get offended but quite frankly I don’t give a flying fuck. As always.

    This is a good read for any persons with disabilities looking to hire PAs or for personal assistants to get a good idea of what it’s like on the inside.

    For those of you who are unaware, a personal assistant is someone that a person with a disability can hire themselves to help them do daily tasks. There is a program through the government that pays these personal assistants. Now, as a person with a disability, my job is to find these PAs. It is also my job to manage these PAs. Meaning I am the employer and the PA is the employee. Now here’s a list of annoying shit I’ve personally had to deal with and that I’ve noticed in general.

    1. There’s a line between employee/friend.

    In most cases, people with disabilities find enough trust in their friends to take on this responsibility. This could go either really well or terribly wrong. I’ve had both happen. In one case, one of my PAs is also my best friend and I’ve never had any major issues with her. On the other hand I’ve also had to deal with a psychotic bitch who does not understand the concept of confidentiality or selflessness. This PA, literally, just so happen to mix both her job and our friendship together so ignorantly that I was forced to fire her and end our friendship. Neither of which I regret. Also, along with this it is important for PAs to realize that no matter how close you are with the person you are helping does not mean they want any half-assed task you ask from them. My point here is, make sure your friend you are wanting to hire knows when each time they are with you it is either to hang out or time to get serious and help with everyday tasks. Also, make sure they know the extent of the job requirement. If you need that PA to help you shave the vag, I suggest you let them know or just let it grow. Your pick.

    2. Confidentiality.
    This is important! If I shit my pants tomorrow the last thing a PA should do is go blabbing about it. Like geez, you would think this is common sense to most people. There isn’t much to say after that. Pretty self explanatory. Zip it or feel my wrath.

    3. Being able to address issues. Assuming we are all adults here, I would THINK if a personal assistant had an issue with the way I was treating them or talking to them or whatever, they would tell me. And I will do the same. Just because I don’t wear a suit and sit behind a desk everyday, does not mean it’s a blow off job like McDonald’s or Taco Bell. And I absolutely hate when I have to turn into full professional employer mode–but sometimes when PAs are not doing what is expected… I have no choice.

    4. Working around schedules.
    This is hard to do. Now, here’s the scoop. College is when it is easiest to deal with PAs and schedules mostly because college students are broke so not only do they want the money, but they’re convenient in the sense that for most college campuses everything is walking distance. Outside of college is a little tougher. This person could live next door or ten miles away. In either case, calling them last minute will never be advised or smart to do. Making a schedule for every single time in the day you’re going to have to pee is NOT easy. Believe it or not. It’s hard to say that everyday I’m going to have to use the bathroom at 5pm. It’s also hard to try and figure out when your PA is not in class or work AND figure out what specific tasks you’re going to need done at which times. You want to shower but your PA has class until 2? Sometimes, that’s just the way it is and it’s a bitch.

    Following up on that…
    5. Dependency. It absolutely SUCKS to have to schedule your life in sync with someone else’s. Not gonna lie, I’ve got it pretty easy because my main PAs rock and are there for me when I need it, schedule or not. But in general, having to live in the reality that you have to wait until Sunday to do laundry (because that’s when you scheduled your PAs to do it) because you can’t open the washer door yourself…. When you’re on your lastttt pair of undies…. And even though you’re home all alone for hours and can physically see the washer and dryer calling your name but can’t do shit about it. That blows. On top of that, this isn’t necessarily a job someone can call in the same day and say they are sick. Having backup PAs are ESSENTIAL but if one of my PAs called me at 10am when I was suppose to get out of bed at 11am to tell me they can’t make it to work…. Well I’ll let you know how long I’ll be stuck in bed for by the time I figure out who else can come and when… Just sayin’.

    6. Don’t half ass what you wouldn’t half ass yourself. This is one of my biggest pet peeves when it comes to PAs. Only in the sense that… If you and every other abled body person in the world cooks their pizza in the oven, what would possibly make a PA believe I would want mine cooked in a microwave. I’m just trying to give a little perspective here. Having someone complete tasks for you, when in your head you would do it a completely different way is interesting to me. There are some things everyone has their own special or specific way of doing, in which case I would give my PA special instructions on how to do it… But just trying to get the task done as quickly as possible is almost never the answer.

    7. Rewarding competent PAs. This is something new I’ve been introduced to and tried myself. There are sometimes when my life is completely a mess and I’m down to relying on one PA for five days and have to create a completely new temporary schedule. No matter how hard you try, there will always be the little cracks in the sidewalk that just make each day go by bumpier and bumpier. (<—–Wheelchair metaphor!) By the end of the five days, if I feel as though I’ve completely over worked or overwhelmed a PA, I do the best I can to make sure they know I appreciate it whether it’s verbally or by adding small bonuses to their next check. I think it’s a good tactic.

    All in all, me and my best friend came up with the perfect way to figuring out which PAs will be the best PAs. There’s a simple rule of three we came up with.
    1. The PA has to actually want/need the money they are making.
    2. The PA has to give a fuck if you make it to bed or not each night.
    3. The PA has to realize that it is a real job and a real responsibility.

    Just because we can talk about all the guys on campus or in movies that we think are hot and are sharing secrets as if we are best friends, does not mean it’s okay for me to continuously let things slide.

    Basically what I’m saying is that… In life you’ll have jobs where you have your strict bosses and your chill bosses. Personally, I’m not a strict boss but that doesn’t mean I’ll be cool with skipping a shower so you can go hang out with your friends at Beer Olympics. Unless I get invited, in which case this changes everything…

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